Tag Archives: Hell

Remembering my HG Loss; Angel

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Today, (21st October 2021) is the13th anniversary of my little ones death. ‘Angel’ was my sons twin, he/she died at 9 weeks into the pregnancy due to the severity of my hyperemesis gravidarum. I only started receiving IV fluids and IV medications at 9 weeks into my second hg pregnancy, the morning after, we found out that one of our little ones had passed away.  I cant help but wonder if I had received more help for the hg, would I be blessed with twin 12 years old instead of just one?

Today I look back to my 2nd HG pregnancy during 2008/9 and think how badly I was looked after by the health care professionals, especially compared to my 2019/20 pregnancy. I was only 20/21 and despite having suffered HG before, was neglected and left to look after a toddler all the while severely dehydrated and deathly ill. My condition became so bad that I went into early liver failure on several occasions. In the end my liver was the reason I had to deliver Joshua prematurely. Throughout that pregnancy I was denied strong anti-emetics like ondansetron until well over 20 weeks despite multiple admissions to hospital and practically begging for help!

How is it I was allowed to get so poorly that I lost one of my babies? That I went in to early organ failure? And that I could be denied such a lifesaving drug for so long despite being so unwell??

Sadly this situation wasn’t rare or even uncommon, especially back then. Since Kate Middleton brought light and awareness to this awful and debilitating pregnancy condition, things have started to improve. But there are still some hospitals and doctors who are refusing medications like ondansetron to women who need it, for uninformed reasons.

Many GPs and hospital doctors do not like to give out medications that can increase the risk of congenital abnormalities to the foetus. It was always believed the Ondansetron increased the risk of cleft lip/cleft palate. And in truth there is a very slight increase in risk. But the risk is tiny.

In every 10,000 normal pregnancies there are 11 babies born with cleft lip/palate

In every 10,000 pregnancies where a woman has used ondansetron there are 14 babies born with cleft lip/palate.

Thats an increase in 3 in 10,000…when you compare this to the risks to the baby when the mother is dehydrated and malnourished, its seems tiny and insignificant. Personally I feel that as long as the risks have been properly assessed and the mother informed then it should be her choice to take medications like this. They may very well be a life saver for her and her baby! Would my baby be here if I had been allowed Ondansetron?

So today I think about all the women who are still left to suffer without the proper help they need to deal with their HG. To the women who sadly lose their babies to HG.

Did you know that the chance of pregnancy loss in an HG pregnancy is 1 in every 3. So one baby in every 3 HG pregnancies wont make it to birth.
Many women feel they cannot continue and are forced to terminate their wanted pregnancies because they cannot cope with the symptoms of HG. 5% of all terminations account for women who couldn’t deal with their pregnancy symptoms. That’s a huge amount!

I believe its time that women are supported, its time that doctors and health care professionals listen to the struggles of women and actually help them control their nausea and vomiting for the sake of all the beautiful little ones lost because of this insidious condition.

If you need help with you symptoms of nausea and vomiting. Or if its become so bad that you feel your only choice is to terminate. If your health practitioners are not taking you seriously I urge you to contact the pregnancy sickness support charity who can help advocate for you and give you some support to help you deal with your symptoms. They are non-judgemental and will LISTEN.

https://www.pregnancysicknesssupport.org.uk/get-help/

Please reach out for support, you don’t have to face HG alone!

R.I.P Angel
R.I.P all little ones lost to Hyperemesis Gravidarum!

You will never be forgotten and always remembered!

 

 

 

HG Reality Quote

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One of my dear HG friends is making reality quote pictures for HG awareness and I thought I would share mine on here!

I find it frightening how one day I can be perfectly fine and then the next I find myself so sick with Hyperemesis. Had I known that for the next 2 years I would not have a single day where I didn’t have at least one episode of vomiting, I think I would have seriously contemplated ending the pregnancy right then and there.

Hyperemesis Gravidarum is hell but the nightmare it left behind has been the most traumatising. You expect to make a full recovery when you have your baby in your arms and for most women this is how it is. But for a small number of us, things don’t return back to normal and we are left with medical and mental health complications that can be long term or even life long.

You take each day of hyperemesis as it comes knowing that you are one day closer to that feeling of pure bliss where you have your baby in your arms and you are feeling so much better. The nausea is gone and vomiting a distant memory. So imagine if you are expecting this and holding on dearly for that! You get to that special day and you have your beautiful bundle in your arms but the vomiting hasn’t gone and you are still feeling that awful nausea! You panic! Doctors reassure you to give it time, its hormonal and it will settle as the pregnancy hormones leave your body!

You give it time, a week goes by, then a month and before you know it a whole year has passed and yet you are still experiencing nausea and vomiting. You are still suffering despite there being no chance of you being pregnant. Imagine being stuck in that nightmare!

It took 15 months after my baby was born before I finally got a diagnosis, nearly 2 whole years of vomiting daily to learn I now have gastroparesis. But whether HG caused that or the feeding tube injury we will never know. It is possible it is a condition I already had but made worst by pregnancy. I will never have the answers, I just know that one day I was fine and the next I became sick and that sickness didn’t end even after the HG ended!

Final Diagnosis and Tube Referral

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So weeks after these were due I finally have the result of my gastric emptying scan and to be honest I was pretty shocked by them! I thought I had a motility problem but I just didn’t realise how bad it was.

It seems that during the time I was at the hospital for the gastric emptying scan the food barely moved at all, there was only a tiny amount that was digested that they couldn’t measure it precisely. With the pictures and data they collected Doctors could see that it would take my stomach 910 minutes to half empty. The average person takes between 43-115 minutes to half empty so my stomach was significantly slower than it should be. My GP had the results before the consultant and diagnosed me with severe gastroparesis, with this result, my symptoms and my continued weight loss he has suggested a feeding tube. My dietician also suggested this and asked for me to be referred to endoscopy for a feeding tube placement.

I don’t know how I feel about ‘needing’ a tube, I feel upset with myself and my stomach for not working properly and i’m frightened about having to rely on a tube again and not eat normally. However it has been a long time since I have been able to eat properly anyway. I have to avoid eating in public or going out for meals with friends and family because I can end up vomiting so I often avoid it or take double of my medication. If I take double medication, It can stop me vomiting (until the meds wear out) but it doesn’t stop me getting the same excruciating pain I usually get. It is so much easier to vomit sooner and end the pain quicker than delay the vomiting and have to deal with the agony until my the medication wears off and I end up vomiting hours later. So eating ‘normally’ has already been something that I cannot do.

I worry about the procedure of the tube itself. My dietician is thinking they will give me a gastronomy or gastro-jejunal tube (G-tube or GJ tube), which is surgically placed and comes with quite a long recovery. I worry about how I will cope with the pain of it, especially with a little toddler running around.

On the other hand I really welcome having some nourishment back, being able to feel like I have more energy. Not getting enough nutrients is affecting my body in lots of different ways: My periods have not come back since the birth, early onset menopause, thin and dry hair that breaks easily. My nails are brittle and break easily. I am ALWAYS so tired and cold, I have to wear 3 layers of clothes inside and 2 pairs of socks, even with the heating turned on. My hips hurt when I sit on a hard chair/bench or in the bath. Laying in bed is uncomfortable where I have so little fat. I am so irritable and my mood is so up and down. I am prescribed medication for my mental health condition but it doesn’t always stay down so my mental health in uncontrolled. I hate how I look now, I don’t look healthy and always have such heavy eye bags. Having the tube giving me some nutrients can improve all of this for me and give me such a better quality of life, so I welcome the idea of this.

In the last few weeks my weight has continued to drop and I hit a new low of 115lbs, my GP has asked that I get an expedited urgent appointment for this tube, so now I am waiting for an urgent appointment with my gastroenterologist to discuss the need for the tube. In the meantime he has doubled my erythromycin medication. Unfortunately I don’t find this medication helps me at all and i’m allergic to metoclopramide and domperidone! However due to the delay in appointments because of the pandemic I have been warned that even urgent appointments are taking a long time. I just hope its soon because I am really struggling now, this condition is getting me down! For nutrition I have Fortisip milkshake supplements that contain minerals and are full of calories but I often struggle to keep these down as they are quite heavy on my stomach.

Devastating Blow

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I ask the reader to have an open mind and be as non-judgemental as possible, with remembrance that we are not all the same and don’t all think and feel the same!

This week (September 7th 2021) I had an ultrasound relating to a minor gynae issue and discovered some potentially life changing and devastating news.

The doctor scanning me asked me about my symptoms whilst scanning. I hadn’t given much thought to my reproductive system as my gastric issues have been the forefront of my mind as well as poor Ollies health problems! But some of the symptoms were there, I just hadn’t connected the dots. The doctor said it was likely I was entering premature menopause, brought on by the trauma of the HG pregnancy or the continuing starvation my body is currently undergoing or a combination of the two. Either way I would need some more tests to confirm this, including blood tests. I’m still waiting to hear back from my consultant, I’m sure it will be a while before I know for certain, the wait is the worse thing!

So most people wont get this, but I’m gutted! Why would it bother me? My pregnancies are awful…you would assume I’m done! Yes the hyperemesis is awful, yes it nearly killed me twice. But I don’t feel done! Maybe its because I’m an angel mum and no amount of babies will compensate for the massive loss I’ve gone through? Maybe its because we have looked in to adoption and fostering and its looking so unlikely we will be suitable for either. Surrogacy is way out of our price range too. Maybe that its just that I’m having my options taken away. I don’t think I would ever choose to fall pregnant again but that doesn’t mean I’m ready to throw the towel in. It is not my choice.

Rightly or wrongly I always associated the menopause with the next stage of life, getting older. Its what happens when you are starting to reach your 50s and here I am only 33. Most of my school friends are just starting to have their children and here I am learning that, that’s it for me! What happens if a miracle HG drug comes in and we decided we wanted to go for another baby? I’m just not ready to take this next step in life. I sit here deeply saddened, its brought all sorts of thoughts and emotions and I suppose it feels like a grief.

Why cant I have normal pregnancies? Why cant my pregnancies be filled with happiness, not tubes and drips? Being as sick as I was during pregnancy made me feel ashamed, ashamed that I couldn’t just ‘get on with it’, ashamed that I wasn’t a beautiful glowing mum to be. I felt like I let me husband down. He couldn’t be the proud dad to be showing off his wife and her beautiful bump! I was always pale and sickly or had tubes in my face and arms. Why couldn’t I just be normal? Even after the birth I had to have the sickness continue..it just feels like I let him and myself down again!
“There’s always something wrong” I hear in peoples heads, they don’t even have to say it. There is a huge hidden shame within me.

Yes I’m so lucky I have 3 beautiful children, I should be so grateful and thankful that I have been blessed with them, some poor women don’t have this good fortune! Please believe me I am grateful and I feel sad for them and deeply sorry. And I also feel ashamed at my self pity! My older 2 children are biologically mine, I gave birth to them but that’s where the mothering stopped until Sarah was about 12 and Joshua was about 10. You see as a teenage mum I had a lot of help with Sarah and I fell pregnant with Joshua when Sarah was only just a year old due to falling pregnant whilst on the coil. HG reared its ugly head and I was so unwell that Sarah had to be looked after by my grandparents. After Joshua’s birth I developed symptoms of M.E as a result of the HG and was unable to look after my children as my illness progressed. I became house bound and a lot of the time bed bound, sleeping over 18 hours a day. So I missed out on so much, the story time at bedtime, the school plays, family trips out etc. I was always in bed, unable to do very much at all. During the day they were under the care of my grandparents and then when my husband finished work he would pick them up. I certainly wasn’t a proper mother to them. Missing out on being their mother for all those years is something I will never get over. It was having Ollie that improved my symptoms of M.E, during the pregnancy I went into remission from it. After his birth the M.E did return but not to such an extreme level. I have been able to cope as a mother to all 3 of the children and able to do so much more than I could before. But for example, I have  only experience of raising one toddler (Ollie) as by the time both my older children were his age they were being cared for by my grandparents. I have never experienced raising a small child before. In some ways it is like being a surrogate mother. I gave birth to my children but did not raise them. 

I was so incredibly lucky to have such a wonderful and caring grandparents who sacrificed everything to help look after my children. Without them, my children may have ended up in care or being fostered or Gavin would have had to give up work and we would be living entirely on the state. It was a hugely kind thing of them. They loved looking after my children, my grandmother still reminds me when I am sad and cry at the burden I imposed on them that actually looking after my children kept her and my grandad young, and that they loved it! I will never be able to repay the kindness they gave to me, I have nothing but gratitude toward them and shame at how I had to rely on my elderly grandparents as I was incapable to raising the two children I should have been responsible for. I will never ever get the years I missed back… but please try to see how being too unwell to raise my children may be why I do not feel like I have completely done with having children…I didn’t experience raising 3 children.

I have loved having the chance to be a proper mum, without having fallen pregnant with Ollie I would not have got this chance. I would go through HG for the rest of my life to have the joy of my children, I’d do anything for them.. But I cant help wonder what having a sibling more his age would be like? Someone for him to play with, the older 2 are already out and about and very independent, this will only increase over time. Ollie may at times feel like an only child. Don’t get me wrong there are benefits to this, more parental attention etc. 

As a mother to babies who have not survived pregnancy, I don’t think you ever truly get over the loss. There is always feelings of what ifs. Having another baby never replaces the one you lost, but you cant help wondering if filling your life with children will stop the constant gnawing at your heart of the ones you lost. You subconsciously try to soothe your soul in whatever way you can, but the reality is you can never make up for that ache. It doesn’t take much to bring up a reminder of the day you had to say goodbye. A familiar smell or if you hear a song that you heard that same day. For me it was the smell of popcorn, we had been at a bowling alley when I got that first stab of pain and I remember I could smell of popcorn (there had been a popcorn stand) and the smell along with the pain made me feel awful. Losing my angels may be a reason why I am unable to feel ‘done’ after having my 3 live children. But I know that even if I had 30 children and wonderful pregnancy experiences it will never make up for those I lost. I will never forget my little angels but I do recognise how blessed I am to have 3 healthy children.

It is so doubtful I’d choose to have another child but that doesn’t stop me wondering what if. It doesn’t stop me mourning the lack of a good pregnancy and feelings of joy when carrying a baby. And that doesn’t mean I’m ready for my fertility to be gone…

There is also the element of fear, I worry what the menopause will do to my body, how I’ll cope with it. I don’t feel ready for this huge next step. 
Forgive me if I seem selfish and ungrateful but I have so many thoughts and feelings in my head! Most of all I’m so angry! Angry that my HG pregnancy possibly caused this. Angry that the NHS has been so busy with covid that they have left me 15 months and more slowly starving, continuously suffering with sickness. How could they leave me to get so bad? Why has it taken so long to get the treatment my body so desperately needs. It really isn’t good enough. If something isn’t done soon, how long before other parts of my body become damaged for good?  

Welcome to my Hyperemesis Gravidarum Blog!!

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Welcome to my Hyperemesis Gravidarum (HG) Blog! Im Michelle, from the UK and am 33 years old with 3 children

I have gone through 3 HG pregnancies and 1 HG loss and feel that there is just not enough support and awareness of this awful condition. And even less knowledge about the after effects to both mother and baby after a hyperemesis pregnancy. I decided to write this blog and share my experiences with both Hyperemesis Gravidarum and also its after effects on my health.

The hyperemesis in my 3rd pregnancy was so severe that I needed multiple interventions to keep me alive including the use of steroids, PICC Lines, Daily IV fluids, TPN and feeding tubes. In the UK some of these interventions were practically unheard of in an HG pregnancy, when I reached out for support there were so little resources and experiences available. I decided that if my story or experiences could even help just one person feel not so alone then it would be worth sharing. So here I am writing this blog; hoping that it will educate, promote awareness, validate the suffering of women with HG but most of all give hope to anyone going through this hell, that there is light at the end of the tunnel. That your suffering is not for nothing and that little bundle of joy is worth every second of this sinister condition.

You never know how strong you are until being strong is your only choice!